This time of year again...spiralling with brain tumour fears

[greeneyedgirl]

I posted this time last year regarding my extreme worries about pancreatic cancer. I went through various tests and an MRI with contrast put my mind at rest and, lo and behold, my symptoms went away. I had some therapy and felt I was doing better.


Then the autumn/winter creeps around again and the familiar feelings are back. This time it feels worse than ever before. I am having a range of symptoms that I have told myself must mean I have a brain tumour:

- I started with a twitch in my eyelid about 7 weeks ago, which I initially ignored, as I know the vast majority are benign and mean nothing. I reduced caffeine, alcohol, had more sleep but it remained. I saw a contact lens specialist who said that they couldn't see any physical reason for it ie. a scratch etc.


- About two weeks ago, I started with whole body jerks (myoclonic jerks?) which happen when I am at rest and awake, not just as I am falling asleep. They were happening really often - can be as often as one every minute - I'd say up to 100 x a day. I'm also getting buzzing and twitching. This is happening in my arms, legs, torso, head, feet, hands. I thought back to the previous few months and realised that I have had a body jerk in my right hand when on the laptop for several months, and not long after that the head one developed. These were very occasional - say once every few days. Nothing like what I am experiencing now. Crucially, these started after reading something online about eye twitches not being related to brain tumours but that widespread body twitches/jerks are a neurological worry. Then, of course, they started.


- It has sent me spiralling because I have linked these symptoms with a nasal into head shooting pain, like almost nerve pain, which I have had since 2020 and was part of my pc worries.


- I feel dizzy and sick. I'm also aware that over the last 6 months or so I feel like I sometimes struggle to find the right words or mix words up every so often (all probably through anxiety).

- I've had tinnitus since my late teens but, suddenly, I'm noticing it much more.



I've spoken with my Dr, who carried out basic neurological tests and thinks that it could be my health anxiety. I was given 2 weeks worth of diazepam to try but only took it on one occasion so far and still felt anxious and the symptoms remained. I've got a follow up next week. I'm so worried that I have a brain tumour. I'm trying to hold all of my stress and anxiety in because I ruined last year's Christmas for my family with my self-obsessed and frantic behaviour. However, it's so hard when my body is physically moving and jerking!


Thanks for reading.

[greeneyedgirl]

Still here and still worrying. I've got a follow up with the Dr on Tuesday. I don't know what to do for the best - ask for a referral for an MRI or try push through. I know that this won't go away without a test. I'm going to restart therapy.
My body jerks have reduced - fewer than 40 a day now, I think. I'm trying not to focus so much on my body.
It has been helpful reading my previous post and seeing how convinced I was that I had a deadly illness; when I simply didn't.

[NoraB]

I am having a range of symptoms that I have told myself must mean I have a brain tumour:

- I started with a twitch in my eyelid about 7 weeks ago, which I initially ignored, as I know the vast majority are benign and mean nothing. I reduced caffeine, alcohol, had more sleep but it remained. I saw a contact lens specialist who said that they couldn't see any physical reason for it ie. a scratch etc.

When I get the eyelid twitch it's because of blocked tear-ducts. Try using a warm compress on your eyes and see if this improves?


- About two weeks ago, I started with whole body jerks (myoclonic jerks?) which happen when I am at rest and awake, not just as I am falling asleep. They were happening really often - can be as often as one every minute - I'd say up to 100 x a day. I'm also getting buzzing and twitching.

I experience full body jerks and also my hands, feet etc but I encountered a LOT of these when I was taking morphine. (Are you taking any medication?)

Body jerks are also common with severe anxiety. (Fight or flight)


- I feel dizzy and sick. I'm also aware that over the last 6 months or so I feel like I sometimes struggle to find the right words or mix words up every so often (all probably through anxiety).

- I've had tinnitus since my late teens but, suddenly, I'm noticing it much more.

All this sounds like anxiety. The problem with anxiety is that it creates so many physical symptoms which feed directly into what we fear is wrong with us. There are numerous neurological type symptoms with anxiety which can lead to us thinking we have a brain tumour - dizziness and nausea being the most common ones. (What you're actually experiencing is fight or flight)

[greeneyedgirl]

Thanks for your reply Nora. It was really helpful to read.

I'm not on any new medication. I've taken carbimazole for hyperthyroidism, which is caused by thyroid nodules not because I have the antibodies so I don't really experience many symptoms of having an overactive thyroid. It's also under control and I've taken the medication for 12+ years.

I'm trying to be much more pragmatic about it and feel that the body jerks aren't as bad but are still happening perhaps slightly less. I've had a cold and that seems to have taken my attention away from it. I've also been trying to tell myself it's anxiety.

Thank you!

[greeneyedgirl]

I'm not sure why I'm posting this really but I feel compelled to. It's been approximately 2 months since I posted initially about my concerns about having a brain tumour. I tried to contain my anxiety and spiralling thoughts and, in the end, booked to meet with a neurologist (on Thursday). I know that this is all part of the cycle and I know I am reinforcing things but I cannot stop my HA at this moment in time.

I have continued to experience my upper eyelid twitch so have had it for 4.5 months now.

The widespread body jerks and buzzing have continued so I've had them for coming up 3 months. Some days are better than others in terms of how many I experience but it is still a lot! Maybe in the region of 50 x a day.

I continue to experience the nasal pain up into my head, which has been there since summer 2020. I'm also getting random pains in my head but totally dismissing these as stress.

I am dizzy on some days more than others.

I feel spaced out on some days.

I have started with nasal, mouth, head clicks, which essentially feel like the body jerks but happening internally. They produce a noise which is audible to others. I have recorded it and also my husband has heard them.

At night in bed my head feels like it is creaking and things are shifting and clicking. More of the noise above occurs when I'm laying down.

I'm having breast pain, and I'm back to feeling the lump on my collar bone from my last HA episode, that I'd convinced myself was a supraclavicular lymph node. Now it's related to my breast pain and the cancer has metastasised to my brain.

I'm bargaining with myself - if it's MS, I'll be absolutely ok with that, if it's a benign brain tumour I'll be happy etc. I just desperately don't want anything terminal.

I feel a sense of utter dread.



I know that this cannot go on. I am trying not to Google, I am watching health anxiety webinars and using strategies from my previous therapy. I just cannot understand how health anxiety can be this powerful. How can something innocuous, which started at a time when I felt totally on top of things have taken such hold again? I feel like I can only downplay and dismiss so much down to HA before my body sends me another symptom to contend with.

I keep telling myself that I'd 'be worse' if the head pain since 2020 is from a cancerous brain tumour. Surely I wouldn't still be here? If it's brain mets then I definitely wouldn't be here?

I'm having an MRI. I know that for sure, as it has been cleared by my private health.


I'm exhausted, though.

[Carnation]

It is anxiety. I’ve experienced everything you have mentioned.

[greeneyedgirl]

Wow, really?

Whilst I've experienced pain, I've never had physical movements due to anxiety before.

Thank you for commenting.

[glassgirlw]

Wow, really?

Whilst I've experienced pain, I've never had physical movements due to anxiety before.

Thank you for commenting.

Oh goodness yes. I’ve had so many physical movement symptoms of anxiety. Twitches, pains, aches, it’s amazing what our minds can cook up for us to physically experience. I’m with Carnation, it’s super likely that’s what you’re dealing with.

But, if it’s been going on for this long with no relief, it’s probably for the best that you’re seeking out professional help - they may be able to help you move past this fear and manage the anxiety better.